Tensions build between autism researchers and the autistic community - BBC Newsnight
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- Опубликовано: 20 мар 2023
- What scientists should, or shouldn’t, research is usually poured over in funding boards and ethics committees.
But the future of autism research is now commonly argued over on social media - as the autistic community speaks up about the type of research carried out, and the language used.
Newsnight’s Science and Technology Correspondent Kate Lamble reports.
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There was once an anti-vaxxer woman, who told an Autistic person TO THEIR FACE "I would rather my child die of a preventable disease than be Autistic."
That Autistic person was me.
I'm one of those late-diagnosed women who slipped the net almost her entire life. A LOT of damage was done in that time. We need to make a world where no Autistic lives, literally or figuratively, are taken away by lack of accommodation and knowledge.
Thank you for sharing your story. You know what I would say to that woman? I'd say, I'd rather die than be neurotypical. During your interaction, she had exposed herself as the one lacking emotionally and mentally.
Yes, autism has it's difficulties, but in a supportive environment we can thrive. Although I'm supersensitive to certain external stimuli, I feel blessed with super creativity, laser-like focus and many other gifts. But yes, we will be misunderstood - that is a fact. xx
That woman deserves every single one of her children to be autistic, that is like saying you'd rather have a dead child than a black child
I have autism, and I think that statement she made and the entire concept of being an anti-vaxxer in general are ridiculous. But to be as fair as possible to her, when she imagines that vaccines might make her child have autism, she probably isn’t imagining them becoming like you. “Autism” to a lot of people is being nonverbal and completely dependent on someone else for everything for your whole life, even though that’s just a fraction of what people with autism are like.
And she probably also thinks that the actual chance of death from a preventable disease due to not getting vaccinated is way lower and almost minuscule compared to the risk of “getting autism” by choosing to get vaccinated. Which of course is not true, and I don’t even have to do the math, because “getting autism” from a vaccine is not something that has happened one single time in history. But that’s not what she thinks, so while her position is extremely stupid, I can’t help but feel a little bit of sympathy for people like that. Not much, but a little bit.
@@zanews23 indeed, but it should be noted that having high support needs shouldn’t be used as “lesser than”, even in the context of making someone’s case. I’m high support needs for example, though that’s mostly due to my *physical* disability. Still, the fact that “only” a fraction of us are high support needs, should not justify the abuse of any Autistic.
The issue is that they didn't get the hint from Temple Gradin 30 years ago. They still talk at us, when they should listen to us. It's a massive Wizard of Oz con.
Not the same as Autism but im partly deaf and i actually had a non deaf lady come into my uni class one day and teach my class what deaf people are like. Im not joking, it was the most ridiculous things ive ever had to sit through. I cant imagine what the autistic community are going though, not be maddening.
Yup ❤
Hmmm, was she accurate?
@@hobbabobba7912 well they dont know they didnt hear 😅
That is so funny - and at the same time not at all funny...
Autistic activists sound that way to me. I just find it ridiculous that I am told that I am meant to be offended by the term high functioning and special needs. When I read that those terms were offensive it was news to me and I've had those labels applied to me years before I read that.
From what the activists say, it's like they are trying to pretend they don't have a disability, which I get, I was in that headspace once, but I'm not now.
This is a classic example of why we have a problem... I ran across frustration when reviewing various research on the prevalence of PCOS in autistic women for a book I am writing (although this wasn't the primary topic of the book). And while I did find research that discussed this, I found many more articles on the studies of women with PCOS more likely to have autistic children, citing the probability of the hormones being the cause of autism. What I couldn't figure out is why none of those studies even considered the possibility that the mother with PCOS was undiagnosed autistic as well, which would also explain considering there is a high hereditary component overall. To me, this is a classic example of correlation doesn’t always equal causation. So many researchers are too busy trying to find a medical cause of these children being autistic that they miss the possibility of the mothers themselves being undiagnosed autistic.
You do understand that it doesn't matter tho right? Even if the mothers are autistic themselves then why are the mothers autistic? Your answer is - maybe the grandma is autistic! And then its a loop of "the autistic person is autistic coz their parent are" . Unless autism is 100 hereditary then your solution doesn't provide any answers.
Well I'm autistic with pcos and two autistic children... This sounds relevant to me
That's really interesting. I only have one friend that has (at least shared) a PCOS diagnosis, and I privately believe she has autism. I've lived in so many countries, and I'm very friendly. My husband says I know everyone and everyone knows me. But she's the only one I know of who has PCOS.
Just a random question but is there also a link between autism, pcos and idiopathic intercranial hypertension (IIH)? I know of one other lady beside myself with all three and was wondering if there's a correlation?
This may be a dumb question, but isn't heredity classed as a medical cause?
I'm autistic and the way the BBC has chosen to frame this report is so hilariously BBC-ish. They're trying to create this narrative of a two-sides conflict with autistic people on one side and scientists/researchers on the other side but if you actually listen to those interviewed it's clear its more complicated and nuanced with most people in a general agreement that cooperation and change is best. The final interview with the spectrum 10k guy makes the BBC's point of view really clear given how charged and leading the documentary maker's questions and statements are in contrast to the researcher's level headed and open minded answers.
I'm also autistic and couldn't help but bristle at their use of the term "the autistic community", as if 1000 signatures on a petition must somehow indicate the unified opinion of all autistic people.
What species? Pseudosentiens, uncannyvalleyus, terrifyingus, autisticus, dangerous, evilus, or what?
@@LucienRothmannFrom what I can tell, "autistic community" means "autisticus genus".
I'm not autistic nor trans but how can I find meaning in life? I worship the cccp virus
Im autistic and i do find life very difficult. I dont really like expressing myself because you do get people who bully you because your different.
Those people should stfu
I'm not autistic but I also don't hold a lot of mainstream ideas or live in a typical fashion, so I can relate and have experienced what you are saying about people bullying you because you are different. For me, I feel like it's almost easier sometimes to be maliciously bullied by someone who is just a jerk than well-intentioned people who think they are helping.
My daughter is 4 and is going through autism test as we speak , I always tell her she's a normal little girl she just needs extra attention, bro your amazing and bollocks to everyone else .i also now realise that I am autistic, but when I was 4 (1994) I was just labeled naughty . Keep going mate ❤
@Reece - Stop lying to your daughter and yourself.
@@deejay7648 why are you being so harsh on a newish mother ??
To people who like to vent about how much your autistic children, students, or patients drive you insane and make you miserable: You have NO idea how much anxiety, frustration, self-loathing, loneliness, and sadness many of us have to go through nearly every single day, partially because of how you talk about us when we aren’t around. Believe it or not, most of us on the spectrum are fully aware of how much of a “handful” we can be for you, and we feel deeply ashamed and guilty as a result. We care about your hardship and suffering as much as you care about ours (the people who claim we are generally incapable of empathy or feeling the pain of others are full of s%;t). If we could stop doing the things that stress you out so much, we absolutely would. But just like a man with severe paralysis can’t simply get off his wheelchair to lessen the burden of those taking care of him, we simply cannot “stop being autistic” as much as we would love to make things much easier for you. If it’s wrong to complain about having to look after someone with physical disabilities, then it’s also wrong to complain about caring for people with developmental disabilities as if you are the true victim. Yes you are dealing with A LOT, you are being pushed to your limits, your patience and resilience is being out to the test; but if you truly and genuinely care about us and not want us to feel like worthless parasites, then stop talking about us as if we are a constant source of pain and stress and headaches. We may not be there when you talk about us like that, but we can hear you. And it not only hurts us A LOT, but it completely contradicts you telling us that we are “fully loved and embraced for who we are” and are “not a burden in the slightest.”
Oh bless you son! I hear you 😢
As a mum with a child who has autism, ive never looked at it like that. I’m always in his corner especially when it comes to these professionals I’m going back & forth with. He didn’t ask to be autistic so how could I possibly be frustrated at him. It’s mind blowing that some see it this way instead of seeing it as a blessing. because as much you yes do struggle with certain things you’re gifted in other areas also. My son has taught me patience and led to my maturity and for that I will be forever grateful.
There is an irony to how hard I, an autistic person, find it to cope with other autistic people. I can be nice but I find it hard to unmask.
This video is decent, but it would have been beneficial to mention that resources are nearly always geared toward "curing" conditions rather than treating and helping people with them. This problem extends throughout scientific culture.
You're assuming autism can be cured. I don't think it's even a disorder - I know plenty of autistic people, and they all seem normal to me. Sure, they do and see things different from me; but I see things differently from everyone else, and so does the entire world. There's nothing wrong with that, and it's hardly a disorder!
Everyone must be normal and happy lest they become a burden on cash-strapped wider society. Autism can't be cured as it is genetic (there is already overwhelming evidence for this). Or is it lithium in drinking water? I'm joking of course but please do keep funding such research.
@@squodgeIt is a disorder though. Not everyone with autism is the same. I have autism and I had almost nothing but problems from it, but I'm apparently not allowed to speak my experiences with the community as it would get me shut down so I'm not a part of it.
My son was diagnosed at 18 and that was it. No help no support no packet of information on what help we can get for him. He’s 23 now and still rather upset because he said if he had support when he was younger he would have been able to function better. We are still working on finding out what to do for him.
Imagine if this research was actually developed and we knew more about the dna of autistic people, so your son could have been clearly diagnosed early. But sadly this research has been shut down now, because some people are afraid of being pathologied. Who knows how many people will go undiagnosed for years because this research was stopped.
I was diagnosed when I was 3 years ago and barely had any support or information. What little help I got ended when I was 13 years old.
Sounds like he has functional autism..it now coming under the umbrella of narcistic personality disorder..if he sees therapist whom deals with NPD it may will help as is will deal with empathy with others etc .
The same happened with me, I was diagnosed last year at 16, with no information as to how I could help myself, or how my mum could support me. It’s particularly difficult as I am a girl, and there is little research into female autism. Life would be/have been so much easier if the support and resources were actually accessible.
@@robertsmithslefttoe3644 big hugs to you and your mom hon.
That first lady's statements already bother me, "Early career researcher." Woman, I was told by a man who was the chief of psychiatry in a region roughly the size of Wyoming, who'd been at the top of his field for 30+ years, that I wasn't Autistic. ...Even after the test came back well within the markers. I found a new doctor and I'm getting the care I need now. It's definitely not a matter of how long you've been doing this, it's about how well you understand the full spectrum.
You have no idea what you're talking about. She said that if someone who is just starting faces aggression from the autistic community it's likely they'll simply stop researching autism, which makes sense. Watch the video again and realize you're way off in your comment.
@@johnc3525 Sweetheart, calm down. I AM the Autistic community. I know exactly what she's talking about but it is not simply the young in experience who are facing backlash. The establishment who trained these young researchers can be just as ignorant. We're not yelling just at young researchers. We're yelling because NO ONE is listening unless they are ALSO Autistic. All researchers will face criticism in their career so to exclude yourself from that criticism is not only naive, it's actually part of the problem. I've been Autistic my whole life, I know what it feels like, how it affects me and those around me. So when I'm told by a professional what I feel isn't Autistic "enough" it's my prerogative to push back and say, "No, that's not how this gets to be written up clinically."
It is never okay for someone to tell another person how they should feel. Especially if that person has no personal experience with those feelings.
It feels like because the research is still heavily focused on the biology that we autistic people are still not seen as fully fledged members of society. When I meet new people I can tell that people don't actually know what autism actually is and that it is different from person to person. I'm so happy that the autistic community in the UK spoke up about this to show that there is nothing wrong with being autistic!
The fact is, we don't know that. I for one fully desire to believe that we are not genetic or developmental mistakes, and are entirely valid expressions of humanity in our own right, but this is a belief that can only be justified through research into biology, to know *what we are* , and not through the work of the social science grifters who wish to make us reliant on them.
@@someguy4405 what would it mean to you if it was proven that autism was genetic
@@MrJstorm4 It would depend on whether it was caused by external factors or natural mutation, and whether in the latter case it was more similar to a genetic defect or a beneficial mutation.
I most desire us to be a valid and potentially independent aspect of humanity, so I would be most pleased if the second of both binaries were true.
I do not like or believe in the idea that autism is "nurture" rather than "nature". I think it's more likely to be inherent. But seemingly contradicting that, I have heard there are cases where one twin is autistic and the other is not, although that might be apocryphal.
Right now, it seems like autism is caused by rare interactions between genes and/or rare mutations with major effects, but further research is required.
It's a nice sentiment, but plainly speaking autism is a disorder. While I've accepted myself being so, and wouldn't want to change it now as it's so much of who I am, I wouldn't wish it on anyone else if it could be avoided.
The amount of stress and anxiety alone it causes when trying to interact with people makes everyday tasks a lot more difficult, and while over time it gets somewhat less so with experience it never goes away.
What should be stressed is how different everyone with autism are, it all does different things to us but has a few universal commonalities, such as the social difficulties. I am thankful I only have what is considered "light" autism, and people who it affects more deeply I have complete sympathy for, but even so with my case that "lightness" has completely changed my way of life from what it would've been.
We then have more researchers trying to brand us differently, such as "neurodiverse", which did anger me somewhat. I am autistic, I want to be known as such, not it given some flashy name with "diverse" at the end like so many others in society have been given. This perpetuates it is a completely natural and I say normal thing to have, when it clearly isn't as I've explained above.
Yes we want to be included more in society, but not calling it a disorder I fear will just downplay the severity of how autism affects us, and research into understanding it more and the differences we have with others who don't have it.
(Thanks for reading, this was incredibly long...)
@@kbproductionsgaming While it comes with disadvantages, it also comes with advantages such as good memory. There's a reason why so many people in the coding industry are autistic. There are things we are better at than normal people, so I think it's arguable whether it's a disorder.
There are many autistic researchers, not just Damian, and their work is so valuable. We have been misinterpreted, pathologised, marginalised, and not listened to for far too long. Nothing about us without us.
I would also encourage people to understand the entire autistic community and move beyond assumptions that it is only people without other co-occurring disabilities and generally lower support needs who are pushing back on the deficit-based framing and cure narrative, because that's simply not the case. It's just not going to be accurate to assume someone who is articulate on social media is always someone who doesn't require much support. Our needs are often complex and dynamic and mixed in with strengths - because we have spiky profiles. I'm university-educated AND I receive professional support AND I have strengths AND I have big challenges AND it is only me who truly knows how it is that I experience life.
@@mikekane2492 Does it not worry you that the government might see it as a cheaper and easier option to make everyone neurotypical or eradicate all of us via prenatal screenings, than to financially support those who want to exist as they are?
To me this is not an ideological or ignorant concern, but a perfectly logical response to the history of the atrocious crimes society has committed against the disabled and mentally ill in the name of science.
There are too many examples to even list but the Judge Rotenberg Educational Centre comes to mind. No one involved faced any real consequences for what they did for torturing autistic children with electric shocks
Research needs to be done, of course, I doubt the petition signers want it to stop altogether. But there are so many symptoms and treatments which could be studied that are more practical and useful in improving our lives than finding a gene which only tells us who is autistic and who isn't, information that could be incredibly dangerous when your average person knows nothing about autism except that it's a kind of disease we should fight like cancer.
Why is it wrong to want autistic people to be involved in the decisions on what studies are done? Why is it wrong that people want to make sure others like them aren't eradicated via eugenics?
Maybe you have faith in your country's government and medical establishment to do the right thing...(I do not in mine but I'll give you the benefit of the doubt)
but do you think other countries won't jump on this genetic research and use it to get rid of the 'burden' that is their autistic population?
@@mikekane2492 as someone with an hons degree in psychology and a masters in behavioural science i have seen the arrogance, egomaniacal, biased and often completely inaccurate treatment by the medical establishment, in many instances. The reason people with autism are unable to trust most professionals is because they are treated badly & misunderstood. I follow the facts & that is how i arrive at the honest conclusion.
@@mikekane2492 That's your opinion. You are entitled to it, but I have taught Autistics for 34 years and have a mentoring business. I totally agree with what was said. I'm afraid I have to disagree with you. Have you seen the special on Channel 4 in Britain? That is just the TIP of the medical abuse occurring, and kids in schools are treated like SHIT by the majority STILL. I see it EVERY day, and it breaks my heart.
@@mikekane2492 I do not know much about this polarity in regards Autism, however your well written peice makes sense to me
I managed my life until my forties, until I was diagnosed. I've held down jobs, done further learning in my adulthood. I'm termed as high functioning.
I'm a person with weird talents, not something to be pathologised.
There is such a severe lack of research into how autism affects adulthood in higher education and the workplace, to name a few. It’s wonderful that there is so much research into childhood autism, but what educational resources are there for those struggling as autistic adults, especially those who never received a diagnosis in childhood? How can we help them not only survive but thrive just like neurotypical adults if there isn’t enough research in adult autism?
You've got that the wrong way around.
It's how violence and harmful environments affect autistic people.
Take a look at what Dr Luke Heard on says on this.
@@Talentedtadpole You're both correct, but examining the elephant from different angles. Yes, violence is devastating, but women tend not to be exposed to that - unless they're dealing it out! Anna's equally correct - I've thrown my diagnosis in the bin, apart from the recognition I'm not neurotypical. If you don't know what you're talking about, how can you diagnose it? I looked at the grounds for my diagnosis, which came down to "Why aren't they like us? We're wonderful!" - a version of The Prime of Miss Jean Brodie.
We get nothing. I was diagnosed at 40. I finally had an answer but it was cold comfort. They all wanted to help my child but I was seen as a liability.
I could tell they were trying to split my family. They wanted me out of the picture so my son could be brought up by " normal" people. They conned him into thinking that if he was around good Christian types, he could be made acceptable. I knew that was not true.
@@jerrimenard3092 Sounds like the American Midwest. Next stop exorcism, last stop lynching. And in passing, faith is a very big part of my life - I was made to be able to handle full-channel Spirit interventions in the European State Department, the EU's Common Foreign and Security Policy team. We won the 2012 Nobel Peace Prize, or rather, He won it.
It seems everyone these days is neurodivergent... we can't possibly research every single thing. It's always the case that research is done first on things that make money (e.g. hair restoration therapy, etc.), then things that kill (cancer and HIV research). At the bottom of the list are things we can't see (e.g. autism, tinnitus) and things that don't kill (e.g. vitiligo). Living with a spectrum disorder is difficult, but people don't die of such disorders. We just learn to cope.
I got excluded from a study on ADHD because I did not perform well enough at the questions, they were deemed 'Intentionally low effort' when it was the best I could do.
Thats awful Im sorry you had to deal with such a shit study
Oh God. The insufferable irony 🤦🏻♀️🤦🏻♀️🤦🏻♀️ I'm so sorry you weren't able to contribute that must have been incredibly frustrating.
If you can't provide usable data you're not useful to the study. Don't be offended, don't take it personally. Be more understanding.
@@johnc3525 yeah but a study on ADHD should include data of actual people with ADHD ... Which means, these people could have a hard time concentrating on answering questions, p.ex.. For a study about ADHD, that's exactly the data you should be looking for, or at least part of the data field you investigate.
@@beccide5491Right, but then it becomes impossible to run such study. They may have to create a study for people like you but you were not useful for the one they were conducting.
One examples of tensions between autism and autism researchers is when researchers claimed that “autistic people don’t have empathy” which as an autistic person, who knows a lot of other autistic people I say that’s completely false and the autistic community agrees with me, there also have been studies which have debunked this claim yet it still sticks and has done harm.
Like everybody says, autism is a spectrum. They were talking about the most severe cases. Or are you claiming that autism has 0 correlation with lack of empathy and the claim is 100% false?
@@EpsteinDidNotKillHimself you don’t have to associate yourself as part of the autism community. There are some gay people who don’t want to be associated with the gay community so don’t. It’s up to you whether you do or not.
@@johnc3525 Yes, it has been debunked because of errors in research design. When scientists were measuring 'empathy' what they were actually measuring was 'how good are you at reading nonverbal cues'. They thought that because autistic people couldn't interpret body language that they didn't care how someone must be feeling, which is absolutely not true.
Thank you for this report! I'm an academic and mom of two autistic children. There is really no excuse for researchers to use disparaging language anymore, it's gone on far too long and I still message academics who label autism as a disease!
Lmao thank you mom! Keep up the good work
It is a neurodevelopmental disorder.
Why not go further? The way the DSM-5 shunted the entire community into the same group is fascist. Any other academic field with as cavalier a dismissal of ignorance would be screamed out of existence immediately.
Get over yourself! It's dim wits like you who let your emotions rule over the facts. Autism is a disease and you bullying people for saying so is pathetic.
@@JenSell1626 The division's already there, between high-functioning and low-functioning Aspies. What Peter Attwood and co did when they lumped the former in with the latter when writing the DSM-5 was academically scurrilous. In any other field of academia, if your thinking's wrong, you admit it, take the lumps to your reputation, apologise, and try to right the wrongs. Not so here. The result has been to create a major misdiagnosis.
Let's unpack the logic. "We know nothing about high-functionality, so we can drop that. They're just Aspies. If one group on the Spectrum has somehow acquired it's own name, we can dispense with that too. They're autistic." The fault lay in the first step of the logic. If you don't know what you're talking about, don't try hiding it like that.
My career was essentially in two halves, joined by my natal ability developed by some unusual training.
Between 1979 and 1992, I rose from a production chaser to Chief Treasury Dealer of an FT-100 Company, earning the respect of Margaret Thatcher's right-hand man along the way. From 1993 to 2011, I was the economics specialist of the Western European Union, the cadre European State Department. While in the business sector, I was under the constant eye of a former Foreign Office vetter. This was the team which won the 2012 Nobel Peace Prize: I wasn't a spear-carrier, either. Maggie's right-hand man had become Head of Bilderberg, and when he spotted me in the shadows supporting a meeting of Heads of State, called me out by my first name and I suddenly found myself explaining our operational activity to the Prime Ministers of Europe. That was no hassle, I'm a Tier One individual, capable of operating at that level. I've steered the futures of around a dozen States, and boosted this Nation back to the top table at least four times. Something our politicians cannot maintain.
What makes a Tier One persona? We're the world-shapers. Both sides of the family have top scientists in recent generations. Folk who are on the kitchen cabinets of the Belgian and British Royal Families. When I showed extraordinary intelligence aged 5y6m, I was short-listed for a move into private education. There, I was picked up by The Tavistock Clinic, who were building the baseline group for the extension of IQ testing to kids. In the cohort-profiling stage (which checks those you're adding are representative of what you're going to by doing statistics on), I stood out: in the 3 years between, I'd somehow picked up 9 years worth of knowledge. Three IQ tests followed, the cohort, the outliers, and finally one at their Belsize Park offices, when I was 12. That one had the whole place turn out to look, the Director came down to congratulate me - what for, I never knew, other than that I was being added to the Main Group (whatever that was). You can never test again, mind. It was only a couple of years later that I learned the maths involved. I got on with life, believing myself normal, but gradually realising I wasn't. Who got to Stage Manage Queen the Saturday Bohemian Rhapsody hit? Got to learn real-world economics from Eddie George and Mervyn King, watched by an SAS Staff Sergeant? They'd looked back, clearly, discovered I'd already opened my account with MI5 aged 11, so a firm job offer was on the table - which I background-checked, discovered was rotten to the core, and walked away from. In fact, during my business years, I still occasionally popped up on the grid, and developed what the shrinks call hyperperception. Very useful, on a crisis management team, to have someone whose steers include completing Gandhi's unfinished business.
So how come you've not heard of me? Because it doesn't work that way. During the testing when the truth came out, my weird did it's thing in and around the Savile Club. Medics were intensely involved, there was no possibility of fabulation, Johnny Mercer's circle were very interested, as I'd have been reporting directly to him if I'd taken the job offer I turned down. They got to see I was the real thing, but too close to those in the Tory Party who were a threat to Boris, and took the fall with them. Instead, Dominic Cummings went in search of "weirdos and misfits", and discovered what the Panel considered, that it was a miracle I didn't have a criminal record the length on my arm.
So, what exactly did they find? An IQ test (based on the reality I was not the same I was when 12) returned 153-4 Binet aged 60, implying mid-160s at peak, mild high-functioning Aspie, hyperperception. My reply was to ask for academic papers to explain, there were none, so I joined the Birkbeck Weekend University group to get my bearings, and discovered the prejudicial claptrap first pulled by Dabrowsky in the 70s. At the same time, I've been wrestling with another mantra, a study for the Belgian Supreme Court, and discovered that one of my major reference sources (Craig Wright) had just changed jobs, to become Head of Yale's new Genius School. His observations (The Hidden Habits of Genius) suggested I qualified, so I demonstrated, using his own text as base, to show he'd missed the gold. He thinks I probably qualify...
With the thought that the mid-160s might be corroborated, I looked back at how IQs were calculated before Binet, and discovered I had the data in that first Tavistock report. They used General Knowledge, and the 14 at age 8y6m is exactly the data used: 14/8.5=165%. That created an alternative persona, and took years to disprove. Thankfully Elaine Aron's High Sensitivity thesis makes far more sense, albeit if she's on a scale of 1-10, I'm off the scale in the 1000s. I've some idea how it works, but first, let's address the abuse, the many millions cast aside because they're cleverer. than their teachers - a point Craig Wright makes in his study. We need adequate education for our stars, not the kind of thing Eton specialises in, attempting to make silk purses from sow's ears.
What I've described is the fruit of hiding the fact a kid can be smart from them - something Craig advocates as well. I disagree, you create Sabiskys, flawed individuals who've self-educated. Please note I'm not talking about the low-functioning, however a thought recently occurred to me: it was sparked by a comment that the autistic merge smoothly into the general population. Does this mean the Spectrum is in fact the population IQ bell curve? Not quite, because we do think differently. I certainly do, I think far more, and am intuitively empathic. All I'm qualified to talk about is me, though, I'd love to hear how other high-functioning folk see it, not in the herd-speak you want to force me into, but in their own terms.
Ooh, this was cool to see being talked about in the mainstream! I'm an autistic psychology undergrad currently doing my first piece of independent research, which is on how autistic people experience empathy and connect to others. Not if, but how. In their own words.
@@EmManson It's such a horrible misconception, isn't it, and so invalidating for those of us who experience that. I'm the same way.
@@shariday9849 Thank you! :)
Yes autism comes under narcissistic pd
@@EmManson empathy is not "feeling emotions" that others feel. That's sympathy. Empathy is knowing/understanding what someone needs that has these feelings and being able to provide that. So, I a mother that "feels angry" when her child feels angry is NOT feeling empathy. Empathy is when she understands and is able to act calmly and lovingly.
that is very cool to hear! i have offers for ba psychology and sociology next year - and my particular interest is autism and disability. it's reassuring to hear autistic people are having success at uni ☺️
Nothing about us, without us!
Tax payers money better spent elsewhere tbh
@@lariyo9122 no
@@wiimegadrive180-clone Funny how people who are quick to say "what about severely autistic people" aren't even autistic themselves to begin with. Plus they immediately assume that any autistic person speaking for themselves (even with an AAC device) is automatically "high functioning" or "not autistic enough."
It's almost as if the NT parents want to make it all about themselves.
@Wii MegaDrive 180 They'll still have a better understanding of it than people looking at it from the outside.
@Wii MegaDrive 180 There's a lot of work done by many people and groups to partner with, listen and elevate the thoughts of those who require support for communication. In disability community spaces where it's safer and there's more support and patience for listening to AAC, letting people take breaks, acceptance of stimming and verbalisations a lot more sharing happens. The wider public might not witness it, but that doesn't mean it's not happening, it is.
As a person with low support ASD, I’d like a support and services system that isn’t stuck in the 1960s charter system limited to just health and social care and if possible, wellness and recreation.
Some of us want support and services in our professional lives as well.
I’d suggest a “cultural assistance” program for the NHS as a way to nationalise the manager system you see in showbiz that has been under much needed scrutiny this last decade or so.
You're delusional. We don't need to be more reliant on a government run by non-autistic people for money and subsistence, we need to be LESS reliant.
We need to support each other and become maximally self-sufficient as a community. The country is a slow-motion train crash precisely because of their decisions.
It's time to stand up and face the music.
Are we disabled/defective? Then we need money and support, the metaphorical crutch.
Or are we (as I believe) entirely functional and legitimate human beings in our own right, given the correct environment? If that's true, then we need to be independent, to be adaptive, and to build that environment.
Yes
My view is that people who have stigmatising views about Autism have created a model and body of knowledge that has directly harmed the Autism community through iatrogenic treatment. They’ve lost our trust.
We need studies into institutional trauma, to unpack why this has happened, and then we can move forward with new goals, acknowledgement must occur before any agreements are made.
If you're so bitter and angry towards well-meaning researchers, guess what's gonna happen? No one will want to do autism research anymore. Congratulations for demonizing those who were trying to help.
What I love is that “neurotypical” started in the autistic community as a joking insult for non-autistic doctors and other such “experts” whose research and opinions left much to be desired, “neurotypical syndrome” was a direct parody of the way they’d portray autistic traits (even harmless or beneficial ones) in such a negative light with scary sounding clinical terms, often in a very dehumanising manner… then researchers adopted the word themselves as a good, clinical sounding term for non-neurodiverse people, all without really understanding its origin 😂
lmao i didn’t know that, that’s hilarious
Neurodiverse is a cancerous term which marks us out as yet another "oppressed group" to be suborned to the government's endless financial black hole programs of selective support.
For their own political gain, those neurotypicals with inclinations to social science desire to render us yet another pawn in their game of identity groups, much like what the black community has become.
We must resist this at all costs, support each other to the greatest possible extent, and reject outside support to the greatest possible extent.
The government is never your friend, and one run by people with cognitive differences to you can never be your representative.
Explains why the word always sounded so awful.
@@Tamperkele what, it being a mockery of overly clinical terms? Yeah, that makes it even funnier that doctors adopted it 🤣
@@DissociatedWomenIncorporated Exactly.
Why do you say there are "sides". It is not a war. The NT's just need to listen rather than tell!
I am a caretaker of ny autistic sister, i can understand her feelings and needs, she wants to blend and talk with us but she can't, she wants to control anger, but she can't. We need to find ways to help those friends and loved ones who actually need it. The research may not be required by some, but those who have serious challenges, they may require it. So we should not think individually because those who need it, may not be even in a position to raise their voice.
This video was about people who want more research about treatments than about causes. Thus there would be more research to help people like your sister.
@@ruthdepew7212 Not true. Spectrum 10K was designed to look specifically for genetic codes of autism.
If she's angry, she is frustrated, you guys are driving her nuts. Maybe leave her alone for once, FFS 🤦
@@bugsandbeasties i know when to leave her alone and when to talk to her and give her love and understanding. I understand her more than you.
@@TheTrailburner You don't get the drift. I've a decent share of a Nobel Prize, and not the only one in the family. This isn't care, it's eugenics. You've labelled us arbitrarily as Disordered, if that's disordered, I'd like to know what Order is. Probably being a good member of the sheeple.
My father gave you the hip implant. My great aunt, a grounding of cancer treatment. I've created an understanding of why Peace is inevitable, what Russia's issue is, and how to resolve this eventually. Could you do without that?
Feels like there is a huge increase in the adult autistic population, and there is a lot more information online about how autism feels to experience, rather than just what it looks like from the outside. Its actually pretty exciting to see a community like this find their voice and if that means that researchers have to treat with the community as a whole and factor their input into designing any research, so much the better. Given medicines history with minority groups and with neurodivergence in general, I think this more even relationship is a good thing. It will help prevent abuses and is likely to lead to better - or at least more useful to those with the condition - research as a whole.
Perhaps self diagnosis is the problem?
@@sansiveria578 and ADHD really exists too
It's trendy to be autistic these days.
@@sansiveria578 if you have ADHD, also having some kind of autism is a 50-50 chance or so I have read. But it would be useful to get a test to know in what part of the spectrum you are, just to be sure
@@curiositycloset2359 even if not everyone self diagnosing gets it right they're not making up what ever symptoms made them think they had autism
It seems a rather glaring omission to do a report on the tension between autism researchers and the autistic community and only interview members of the former group. Couldn't they have found some of the organisers of the petition against Spectrum 10K, or asked folks in online spaces for autistic people what they thought? The BBC would have had to offer balance of this kind when addressing any number of other issues. The fact that they didn't feel the need to here is exactly the type of thing that makes us feel invisible as a community, and is the source of the frequent misunderstandings of our wishes that their story finds so perplexing.
Dr Farahar is Autistic and was part of the Boycott Spectrum 10K campaign ☺☺
I'm autistic. Autistic people, verbal and non-verbal, children and adults, engaged in the discussion or not, are met with so much stigma, prejudice and and mistreatment and one of the main reasons is the very topic of this BBC clip; autism research has not included (and validated) autistic perspective, autism hasalways been described and explain from the perspective of someone on the outside looking in. Therefor the understanding of our way of functioning has been that we are pretty much meaningless beings.
You've said this so beautifully. 💜
I really don't understand these comments, scientific research isn't exactly about perspective, it is about science.
@@nusaibahibraheem8183It's science done badly.
@@673497can you give an example of science done badly?
@@nusaibahibraheem8183 science is all about observation, especially in social sciences-so it very much is about perspective, as every observation must come from a perspective of some sort. And if that perspective pathologizes every aspect of a thing without recognizing any accompanying advantages, then it’s a very biased perspective.
There needs to be more support for autisic adults. My local autism adult service is not letting me access their support becuase I got a private diagnosis it's ridiculous! I am struggling with my sensory issues and family and work life. Do I have to keep going private, how is this fair!? Services need to improve!
Researchers who work with marginalized populations should make a real good-faith effort to include that community in every step of their research to both prevent harm and to improve the science itself. It's heartening to hear the scientists interviewed in this being so open to the feedback they received.
The only thing that's marginal here is your lead on the average IQ of a tree. The groups you're referring to are fundamentally made-up. There is absolutely no mental difference between a black and a white person.
Whereas we have actual cognitive differences, the only kind of differences that really matter in a human being. We are worse at some things, but much better at others. We are not another "oppressed group" to be subordinated to the government by reliance on hand-outs. Or if we are, then we shouldn't be.
No they absolutely should not. That’s just introducing bias. If it’s real science then the result will be the same regardless of any opinion.
@@umwha Do you support Eugenics, troll?
@@umwha but your statement is hugely underestimating the complexity of psychology - psychology studies generally are more subjective, open to interpretation and require input from real life experiences, compared to say a physical science such as physics or chemistry. That doesn’t mean the results are biased, having autistic people related to research on Autism will instead include richer interpretations
@@chickennugget3325 I'm not seeing what you mean.The study in question was genetic not psychological. Psychological research is not subjective. It can be psychometric tests and scales which are objective measures. Or it could be ethnographic qualitative interview based research, where the transcripts are coded for themes. But in htat type of research, the data (thoughts ,feelings, ecperiences) come directly from the participant not the reserarcher.
As someone with autism, it is indeed very annoying that instead of research on what we actually need, we have research of the causes and how to handle us. It's aweful. Especially since some autistic people, like me, prefer being autistic.
you are not a victim darling. quit the act
prefer being autistic? that's nuts. It's like a disabled person without legs saying they like it that way. I have adhd, I long thought that I don't, but my life has completely turned around for the better since I started taking meds. All the problems people blamed on my personality, were actually just the disability.
@@FiFiFilth Nah. I much prefer being autistic and I'm not the only one. It all depends on how much you have benefits you like v.s. things you dislike about it. So there are people that suffer more from being autistic and those that benefit more. It isn't something where there's only bad like OCD or missing legs. There's good and bad things you get with it.
@@FiFiFilth Autism is only a disability because society isn't adapted to us, but there's nothing inherently wrong or missing in us, our brains just work in a different way. So yeah, it's definitely not "nuts" to not be dying to be neurotypical.
@@FiFiFilth A person without legs knows they don't have legs, and can see what others with legs can do that they can't. There is no analog with Autism, because the vast majority of research has not been directed at understanding what Autism is, only hypothetical causes and their hypothetical remedies, which do nothing to help anyone even after seventy years of that dead-end being pursued religiously.
Personally I am autistic and I want to be a sociologist!!!! I think being able to view society from more of an outsiders perspective really helps me, as well as my love for data. I have a lot of different interests within sociology but the social aspects of autism is something I'm really interested in!!! I already did a super fun (to me lol) deep dive into autism statistics for a college project and got a 100% on it. :D
I would question a researcher doing their first paper on Autism if they HADN'T SPOKEN TO US AUTISTICS. Stop the research and start listeming to the evidence: our lived experiences, and how to support us.
Say what you want but having autism destroyed my life. I didn't get diagnosed until I was 31. Was shunted from one mental health service to another since age 14, tranquilised just enough not to cause a fuss but not enough to help.
Did autism destroy your life or ableism?
I feel you, very similar experience here.
The people who view their autism as a lifestyle to be proud of should show a little more empathy towards those who struggle in life because of autism.
Autism destroyed my life as well. Suicidal ideation never leaves me, not for one single day.
Same here
Y'all real ones for reporting this. I was diagnosed 20 years ago.
"Nothing about us without us" should be a basic principle and research should take into account the needs and interests of the community.
However, I wonder if the activists represent the whole spectrum or only a segment. After all, autism is a very diverse spectrum. Even then I can see why a focus on biology might not be what the community most needs and research should always include those affected.
part of it is because the autistic community has been under assault from groups like autism speaks for close to 20 years. So the Autistic community has developed a bunker mentality when it comes to genetic research
The problem is , the "not without us" crowd are actively denying that there is actually a biological basis for autism.
I think we should tackle this in a more psychological, perhaps philosophical manner, because i've had my diagnosis practically all my life, and i've always gotten proper therapy, yet i still don't know exactly what autism is, and how to describe it. Everything just seems to boil down to "Ah, i'm inherently weird enough to stick out, but not weird enough to be a bother, for better or worse."
We need to know the root cause of autism, or else we can never build a real identity around it. If we can't make it an identity, we can't build the necessary environments in which we can be comfortable.
@@someguy4405 we’re still arguing over the root cause of human existence. Knowing the root cause of autism isn’t going to tell us how to make society accessible to autistic people, but research into *how* autism affects people and the societal barriers they come across will likely give us much more useful information. Autistic people are more than ASD, we need to acknowledge their identity extends beyond their diagnosis.
@@makslargu5799 No one of significant expertise is arguing about the root cause of human existence. There are extreme creationists, but most people accept the evolutionary explanation.
Research into how autism effects people societally will become an infinite money vacuum, much like the research into the societal disadvantages of women and racial minorities. We will be made into yet another "oppressed group" weakened by reliance on privileges and entitlements granted by ailing nation-states in their craving for cheap popular support and slavery to their ESG masters in the financial world.
We do not need information about society, we need information about us, because this society will not exist in five-hundred years, and we will.
One important thing people seem to forget is that autism is currently solely diagnosed through analysis of behaviours and also through the autistic individuals' self-introspection. If someone identifies as autistic then it means they struggle in various ways to do things neurotypical don't.
Except, nobody can experience the lives of others, NTs nor NDs. We don't actually know what goes on in other people's heads, so how can we make comparisons to our own minds?
So what's the difference between a socially awkward neurotypical person and an autistic person? It's whatever you want it to be.
Mental illness, mental disorder, depression/anxiety, quirkiness, psychopathy, learning disorder, social conditioning, stupidity, apathy, etc.
@@scrambledegg7908 No, it's not whatever you want it to be. Neurological differences have been observed, and autism isn't just diagnosed based on self-identity or ambiguous social awkwardness. A diagnosis is a diagnosis
thank you so much for this report. i felt this for so long
As someone with speech dyspraxic and pragmatic semantic disorder (which is on the spectrum between autism and Asperger’s syndrome) and knowing friends who have various disabilities including autism (on various levels of severity)- this just proves that the world is being more and more ableist. Everyone is on the spectrum and everyone who are willing to research about any and all ‘disabled communities’ should acknowledge you have to address and approach people with respect and compassion. Yes I think it’s great to do surveys and scientific lab work but really we need to help the day to day lives of the ‘disabled communities’ by providing the right facilities and support which suits each individual and their needs (and putting them in a care home is not always the best option to encourage them to have independent lives). At the end of the day- anyone can be disabled, not matter what race, religion, ethnicity or gender you may be - and yet we are the ones who get the high levels discrimination and prejudice (and nothing changes). This isn’t me being woke (to be honest I don’t even believe that word exists)- what the ‘disabled community’ wants is respect, fairness, support, equality and most of all equal opportunities in life. I find it horrific and disgusting that still in Britain that people treat you with no respect or decorum for being ‘disabled’ no matter if it’s mentally, physically or emotionally. We should be encouraging the disabled community to live independent lives through providing them practical support, ensuring that individuals with disabilities can go to work (if they are able to) and most of all embrace them into our neighbourhoods/communities. You shouldn’t let a disability be a permanent label or mark that someone views negatively, we should encourage them to fulfil what they want in life like any other human being! Enough is enough- we need social change not only in Britain but across the world to respect, positively encourage and care for all disabled communities. It’s our responsibility and duty to support and care for the all disabled people in all communities and environments (from the home and the workplace to hospitals and pubs) like we do with everyone else.
FYI I don’t normally comment on RUclips because of all the toxicity and cyber bullying it brings but I had to on this case because of the experience I have and for voicing my friends’s experiences too.
@Rory Blessington, very well said and with such eloquence. My adult son has autism and he also finds life challenging, most of time really. A lot of it is down to peoples lack of understanding and allowing difference to matter. I believe a society that cannot embrace and treat it's ill and disabled in a fair and compassionate way, has failed on all levels. Peace and Love to you Rory.
@@boota1979 thanks for the kind words. It’s probably sounds more like a hodgepodge of ideas than anything eloquent but thank you for your lovely reply. I agree with you, that society is failing those who need it most but I believe that society can deliver and support the disabled community with compassion. I wasn’t able to speak until I was 4 and I was almost going to be given a voice box where I had to type in what I wanted to say. Instead I’ve been very lucky that I had the right TAs and speech therapists during my childhood, none of them were private, I was brought up in state schools, I had to fight from bottom sets because of poor SAT results and somehow I was elected head boy by year 11. Most of the teachers, TAs and NHS speech therapists I had understood me. Understood that I bottled my emotions. Understood when I was having a bad day and a good day. Understood my disability to the best they possibly could (because they weren’t autistic or dyspraxic but they showed compassion and they gave me an opportunity). Now because of them I was able to achieve the best GCSEs and A-levels I could which allowed me to study English and Drama at university (I know a degree isn’t everything but I was just trying to highlight the irony for someone with a communication and language disorder). And that’s why I believe in a better society. I believe Britain and the world can reform and that we can become a more openly accepting society towards all disabilities. But it can only start from somewhere and that’s highlighting the misconceptions, the misinformation and the mistreatment the disabled community faces on a daily basis. I hope that you and your adult son is able to know that no matter how bleak it may be, you’re not alone and that there are people out there that do want to give autistic people a chance in life (also sorry it’s a long message - I don’t normal type on RUclips due to it being public but the sometimes you have to voice your experiences especially when you know the situation firsthand).
I heard someone recently say "you might not be disabled right now, you might not have been born with a disability, but that isn't guarenteed to stay the same." They hit with the figure for how many people acquire a disability later in life but I forget what it was. It was really well put though. It's pretty dumb that abelism is so rife. What a fine way to waste the majority of human ability and resources.
I'm glad you spoke up
@@kellysouter4381 thank you for your kind words Kelly. I hope that one day we will live in a world that we don’t need to be constantly fight for our rights but for now we need everyone to work as a community to learn for disabled individuals about how to respect, care and support them while not concreting institutional ableism forever
Nothing about us without us.
The same mantra over and over. Nobody cares about your feelings! so Shut up and stop harassing scientists.
In 2011 Simon Baron-Cohen published a book saying that people with autism have zero empathy. I think this demonstrates how out of touch with the autistic community he is. (Also, in the same book he says people with BPD/ EUPD have zero empathy which is just as outrageous.)
Simon Baron-Cohen did start the "no theory of mind" myth, but he has become more in touch over time. He does talk more to autistic people, some being researchers. Wether or not that makes up for or is worthy of forgiveness for his wrongdoings is not for me to say.
Can you quote the exact sentence? There's a difference between an intellectual understanding of empathy and an intuitive empathic experience of empathy.
In the former a computer can computate the correct semblance of empathy and in the latter it can only be experiential.
I've never witnessed anything by Simon Baron-Cohen in his work that suggests he's as you put it "out of touch" whatever that means with the research he conducts.
You're lying about him now. literally slandering him. He never says they have "zero" empathy, they factually have deficits with empathy which cannot be scientifically denied.
So many surprisingly strong opinions, considering they're based on EVIDENTLY little to no understanding of the many layers & complexities involved, historically & leading all the way up to this current moment.
This comment thread is a prime example of why the discourse needs to be challenged & the systemic issues need to be addressed.
When the system goes unchallenged & unchanged for the better part of a century, you end up with that misinformation leaking down into the population as perfectly demonstrated here.
But even more worryingly, our oppressors power has been so intrinsic to every part of our existence that it has insidiously seeped into the consciousness of autistic people themselves, who buy into the narrative that they are the problem & the only solution is their oppressors 'cure'.
#NothingAboutUsWithoutUs
Nobody is stopping autistic people from becoming researchers and giving their spin to research. Who's oppressing you other than autism?
@John C
One profoundly ignorant statement followed by a profoundly ignorant question.
I rest my case.
@@sarahjane6749 Your case of playing victim, sure.
@John C
There are many complex reasons why suicide is the leading cause of death in autistics (without LD).
I suggest you educate yourself fully in them & how they relate directly to how we are systematically treated or pipe down & keep your ignorant opinions to yourself.
I'm replying more for the benefit of anyone reading this who may be uniformed, rather than for your benefit. But I'm done now.
If you persist, you're either willfully ignorant or a troll & I have no time for either.
@@twixisgodandsoaremacerator9285 Feel free to feel bullied when you're actually bullied. When you're making stuff up and blaming others for your problems you will get a NO from me.
The worse is the discrimination. I am suspected Autistic with bipolar. Not wishing it on my worst enemy.
Autism is an interesting subject to me. It's kind of like how Sickle Cell disease works.
A moderate amount makes you resistant to Malaria. But too much of it can negate such benefits.
And in my opinion, there was an evolutionary advantage for Autism somewhere in the past. Especially if we're talking about the first inventions and civilizations being built from scratch.
I’m autistic and I disagree. There is nothing inherently wrong with being autistic. I live life fine… as long as other people don’t make it difficult. If the whole world was autistic, then I doubt we’d see any problems with it. The “problem” is other people, society and social norms, not autism itself.
@@robertsmithslefttoe3644
"As long as other people don't make it difficult." Who are you to say that someone else's mindset is wrong, if someone else cannot say the same of you? If two people have different mindset, who must adapt to whom, and what decides this?
@@twixisgodandsoaremacerator9285 What did I say about "being able"?
@@Jorbz150 neurotypical social norms and arbitrary values are one of the main reasons neurodivergent people get treat as poorly as they do in society. I think the group who suffered that treatment deserves a say in what needs to change when it comes to that. If your mindset and social norms leads you to treating someone like they're sub-human because their brain is not designed for that kind of thinking. Then you're mindset and social norms are wrong.
A lot of highly intelligent people could qualify as asd or adhd. We need to examine how we are medicalising normal people. We should not be glorifying autism categorically, but looking at what high functioning autistic people have to offer which is so often invaluable intelligences especially in specific areas, whilst being realistic about the social and emotional issues instead of being too scared to discuss it.
No need to look at what autistic people have to offer. Just do it, offer what you have to offer, no need for research.
As an autistic person, it is so hard to watch people say how deficient we are, and to be treated as lesser, especially by the medical community
I'm not autistic but I often hear and I believe it's common knowledge these days that autism is a wide spectrum and many people function mostly normally, some excel in some ways, some are way behind. The fact that some autistic people can't function is a fact, what do you want to do about it? Pretend it's not?
@@johnc3525 Are you actually suggesting that autistic people don’t know that there are challenges with being autistic? Do you think that we are actually stupid or something that we wouldn’t know a basic fact about our own life?
@@prikkeldraad7112 No, I'm saying that it is a fact that many autistic people are mentally challenged. It's not that the medical community is mean.
@@johnc3525 Guy, if you characterize autism as meaning that you're "mentally challenged" you have never even opened the DSM to get its basic definition. Autism is a neurological condition, not an intellectual disability. Some people have both, but it's not a requirement. If you can't even be bothered to do the minimum research about it, at least have some humility about it.
@@prikkeldraad7112 I said MANY are, not all, and I also said some excel in some ways.
"31% of children with ASD have an intellectual disability (intelligence quotient [IQ]
As someone with Autism, I would've like to not have Autism
Same
I second this.
Mine has dulled a bit as I've become an adult (23 atm), and I can absolutely say from having a 'taste' of what it's like to not have it, I absolutely would jump at a cure
I don’t know if I’d change mine but I’d have liked to have known about it before I was 43.
I'd rather have an alien thinking brain than fake friends and an ordinary life.
I like autism in that it makes me different and unique and it makes people much more interesting. But the key question is would you be happier without it? I'd say definitely yes
I am not autistic and dont know personally anyone who is. Why is this? I dont know. But I am disgusted that only a tiny % of funding goes toward supporting autistic people and their families and (importantly) service providers. Autistic people and those who are closest to them should be at the centre of any research into the support they need. Do they really need any more genetic research? Just so some researcher xan produce yet another pointless paper?
I wonder what Damian Milton would find if he researched the psychology and sociology of humans outside the autistic spectrum. What could the latter learn from this perspective from the other side? We (humans) are imagining how we could communicate with supposed aliens from outer space, while there are different formations/expressions of human intelligence on Earth which can learn from each other.
It's not a bad question, and you might like to look up some of his early research to find out! Also his recent co-authored paper, 'The Human Spectrum'.
Yep! Look into the double-empathy problem (he coined the term)!
I mean, he has. Like Oolong points out, he's already done that. I wonder what allistic (non-autistic) autism researchers would find if they spent more time actually listening to the autistic people they're studying, instead of just deciding that's how it is?
(I'm an autistic researcher currently writing a dissertation on this very topic, if you want to dance.)
Thank all of you for the pointers!
Only a minute of Dr Farahar's interview could be included (Autistic academic, researcher, trainer, and educator). They also discussed during the 45 minutes not aired:
* The need for intersectional research to represent Black Autistics and Autistics of Colour
* Research methods that afford non-speaking Autistics to have their perspectives included in research
* How they hear from families with Autistic young people with high support needs, and how families' priorities are also at odds with non-autistic "autism" researchers - where families want: better services; better/adapted therapies; medical support, and research for co-occurs like epilepsy and apraxia (difficulty or inability to speak)
* Dr Farahar also talked about how no research that is about human beings can be knowledge/science for science's sake - no researcher or human phenomena under study exists in a vacuum with no macro consequences/implications
* Dr Farahar also talked about how they can perspective take with the difficulties non-autistic "autism" researchers are experiencing following scrutiny from Autistic people, families, and allies, but that they will always prioritise the needs and emotions of families and Autistic people themselves who are struggling to survive (where the greatest cause of death for Autistic people without a learning disability is suicide and is epilepsy for Autistic people with a learning disability).
Unfortunately, the BBC is infamous for twisting things.
This can be applied to any condition. How does one research if offence is going to be taken
This is definitely better for everyone involved
5:29 "He says in the longterm that will actively involve including more autistic researchers"
Key word being "Including". And that's the problem here. 'Inclusion' is being invited to a table that's already been set.
Autism research doesn't need to "Include" autistic people. It needs to be LED by autistic people!
No it shouldn't, it should be led by people who are experts in the field. Whether they are autistic or not is irrelevant.
@@Duncan23 Being autistic is 100% relevant. There's no better expertise than lived experience. A lot of "Autism Experts" who aren't autistic themselves, have made far too many inaccurate reports on Autism over the years, that they're only now discovering were wrong.
It absolutely doesn’t. That’s not how science works at all.
@@BUSeixas11 It absolutely does. And the history of Autism science is proof of that. Go check out the Ted Talk titled "Why everything you know about autism is wrong", by Dr. Jac den Houting.
They highlight why there is a serious and fundamental problem with how the science of Autism is applied.
@@davethibault6734 You haven't given any information to back the assertion that "there's no better expertise than lived experience." That may or may not be true. Of course there have been inaccurate reports on autism, as with every condition. Tells me nothing about which people should be the leading experts.
I have two children with "suspected ASC" (we are still on the waiting list for an assessment, more than 2 years after joining it), and I very much suspect that I am autistic as well. However, although my mother got my brother diagnosed as a child, despite telling me that I probably had ADD (this was 20 years ago, I know the labels have changed), no one ever offered me an assessment. So, I'm not surprised that my kids are probably autistic, as I dare say I am myself. But I don't see any reasonable path to an assessment and a diagnosis.
I find it very telling that the statistics in that video also highlighted what a tiny proportion of autism funding goes towards diagnosis, and yet no one mentioned that fact either. There's just no interest in getting an accurate read on how common autism really is, and I feel that until this changes, nothing else will either.
Well, like they showed in the video, the genetics project was shutdown by your community who were afraid of DNA diagnosing. Your community is extremely toxic. The comments in this video are contradictory, everybody complaining about opposite things. If I were a researcher I would stay away from autism, not worth trying to help such angry, entitled people.
Framing autism, which manifests in an infinite number of ways in individuals, as a pathology and creating a database of genetic markers is eugenics. Genetic cataloguing and categorisation of individuals should not be embraced and approved by ethics committees so swiftly without long-term discussion in the wider community. Just because we have the accelerated capacity to study genetics, doesn't mean it has to be applied to every medical issue.
Autism has always been eugenics, created by Nazi scientists who had thousands of children euthanized in the name of research.
By your definition any genetic research is eugenics. I did 23 and me. It told me about my genetic likelihood to get Alzheimer’s and diabetes. Is that eugenics? Should that be stopped? Should we remain ignorant about every genetic condition ? Is that moral?
Why not? Wouldn't the catalogue of genetic markers for autism allow for swifter diagnosis and earlier support programs? Who knows, with the swiftness of develop of the CRISPR system we may find a way to 'cure' autism with enough research.
@@justaguy7517 Dont say that. Its the prospect of a 'cure' that scares them. They will see that as genocide. I am not kidding.
@@umwha it *is* eugenics yes.
Are you a followers of galton?
I'm autistic. When I was first diagnosed, I watched a video hosted on the NHS autism page intended to show that there are a variety of different people, with different interests, who can be diagnosed. The video showed one guy presenting the pictures hung on his wall, and explaining why he liked them, presumably because his interest is explainable only by use of his autism. I found it ridiculous. If I like something, I like it for what it is. I don't like it just because I'm autistic. Yes, in the background there are explanations for everything we do, say, take interest in. But I find it demeaning that autistic people seem to be 'microscoped' in this way. If somebody at work wants to progress, I don't explicitly say to them "oh, is that because you're motivated by a deep-seated fear of inadequacy?" "Was mummy very distant and cold? Is that why you're so dissatisfied with where you are right now?" NO! That's rude. So what's the difference? Neither of us are specimen in a petri dish O.O
So what do you want exactly?
Well said!
This is just my perspective as someone on the spectrum, but research into the "why" side of autism biology is something I definitely support, even if it turns unethical and is hidden from public view until it's completed. I totally wanna see articles that are accurately able to explain autism the way we can explain other medical things we already have well documented like the common cold of years passed.
I am in no ways qualified as to say what the current research and correct information out there is, but I'd definitely support a cause for genetic research into making an autism database in order to further research into the subject, even if I were to get involved myself.
It is a disorder, but calling it a disorder isn't belittling. You do not have less value if you have a disorder, and if what I have is recognised as a disorder, then I get recognised as disabled and get the extra support I need.
A very telling study showed in a cohort of 85% severe & 15% moderate autistic children undergoing a very rigorous intestinal gut flora replacement therapy, that in a two year follow up study the symptoms had been reduced to only 15% severe, 30% moderate, and 45% no longer on the autistic spectrum by any detectable metric, with improvements still ongoing. These children were characterized by cesarian births or early post natal antibiotic treatment regimes in their pasts. The significant improvement suggests genetics might not be a major component of the condition.
I think the research is fine. It is painful living with autism, having your mind and soul desperately desiring to socialize, yet your body being unable to do so.
I can't deepen my relationship with my friends because I need long periods of time off between my interactions with them, I know I'll never have a lover because I just can't take any relationship to this degree of closeness.
I feel like the community is trying to unrecognise the condition as an disability, Idk why.
I've been suffering my whole life and wish every day I was never born.
I understand it's different for everybody but for me it's a huge disability and if I had had children I would have prayed to not give them my autistic genes.
People crying eugenics here are patronizing and virtue signaling without any real empathy.
This is _my_ truth.
@@anniestumpy9918 I'm sorry that your simptons are that bad. What you most struggle with?
For me is just coping with loneliness. I do it fine most of the time, but sometimes is like watching the world through a window where I can never trully interact with people as much as others.
I think that many people trying to treat it like it's not a disability really just want to get rid of the stigma. Allyship with other disabled groups is the answer, in my opinion. Treating it as if it is not a disability at all would simply risk removing support for it. Ableism is the real enemy here.
Autism is disabling. There are just some things we autistics cannot do without difficulty or without aid, and that's okay. We can be proud of our difference and our community, like the Deaf are. We can long at times for what could have been, like those with chronic pain. There are joys and sorrows and comorbidities, including depression, from which I suffer. But if people just accepted that autism is a disability and that autistic people are still worthy of love and care, life would be just the slightest bit easier for us.
TL;DR: Autism is a disability and pretending it's not prevents us from making important connections between the autistic community and other disabled people.
@@soul741xD Loneliness as well (although I'm in a relationship, which is a miracle by itself). I can't really maintain friendships because they exhaust me, even with family members.
Also sensory problems (acoustic).
In the workplace there are constant misunderstandings that crush my confidence because of perfectionism.
Best wishes to you as well!
@@anniestumpy9918 @Annie Stumpy If you are in a relationship treasure that. I hope I'll manage someday too.
For it is just so hard to advance and let in, the more I like the person the harder it gets.
My senses are ok, besides a lil off sense of touch, and a sensible sense of smell.
I feel like if they ever found an effective treatment then it should be strictly optional. But I suppose the problem with that is people would feel pressured into taking it.
even the word treatment puts it in a negative light, though. and i realise you probably didn't intend that. but the surrounding language hasn't changed much for years, when actually more focus is needed on support for things like housing, employment, and one of the most fundamental areas which is far too easily and too often overlooked; inclusion.
As the graph at 1:50 demonstrated. Research funding into "effective treatments" is taking up a disproportionate amount of funding. While autistic people who don't want a cure (Which makes up at least 90% of the community) are finding themselves with a lack of resources and support.
This is not representative of what the community wants.
@James Wilson it's a fact though. so long as you and others keep referring to it in the same category as a health issue, the more everyone else will see it as an issue that needs to be solved. It's not an issue. I'm absolutely fine with it. i probably wouldn't have the work i have now if my mind didn't work the way it does. language absolutely does matter.
@Jonny Gertmunger what's on second. i don't know's on third 😄
@James Wilson "people with autism want cures" no they want accommodation that helps them exist and therapy that helps them cope
Thank you, doctor.
For me, I find it difficult to even find a therapist who can help me to cope with adulthood as someone with autism. Where I live and with the insurance I have, it's next to impossible to find anyone who can help. Just a couple of years ago, I had called my insurance company to find a therapist for me, and the only one they could find was someone who helped autistic children, not adults. They bit the bullet, referred me to him, and after a while, I had to stop seeing him because at the end of the day, he couldn't provide any more than a therapist who didn't specialize in autism. It's extremely frustrating. I'm having to do research on my own, and while I am learning a lot, I don't know how to apply the information in a way that's actually going to help me in the long term.
The focus for therapy is on children, once you become an adult it's good luck. I envy the kids who were diagnosed early and had assistance in life skill dev, but I recognized early on that I was different (I was diagnosed in my 40s) and managed some coping skills, like eye contact. But I am in the same boat... An in network or affordable therapist that is skilled with adults on the spectrum is the holy grail I've been seeking for years. I had one, but he moved out of state. Funnily, I moved to a state with a higher rate of autism cases but there are fewer ologists/iatrists and therapists here. I guess they go running, screaming into the night...
@@sirenwerks I was actually fortunate enough to get diagnosed at age 4, but this was also in the 90s. I don't know if I just had a bad experience or if the resources simply weren't there, but the person who diagnosed me told my parents that because I'm considered to be high-functioning that it would be better to raise me the same as a NT kid, and that I might "grow out of it once some of my patterns were broken". 😓
I always knew I was different, but my parents never told me I was autistic. In fact, I wasn't told until I was 21 when I landed my first job. They were like, "Oh by the way, you have autism and you know how you do 'such and such' when you're stressed? You can't do that, otherwise you might get fired." Not fun at all. 😓
I'm sorry you lost a good therapist. They're definitely a rarity it seems...
Is it possible that there's not much else that can be done for adults, that a regular therapist is all that you need? Someone who helps you navigate life?
Also, "autistic community" feels derogatory. We aren't a community, we're all just individuals you've grouped together for having slightly different brains than you
Same brain, different mental map.
People are people and should be treated as such.
@@Keln02 That is by definition a different brain lol.
And your mothers all consumed Aspirin when they were pregnant.
Save can be said for trans people etc. The community exists online.
Agreed. You would only be a part of a community if you had built one together. And just for comparison: Has anyone ever talked of a "left-handed community"?
It’s fine for high functioning autistic to be bothered about this but I think they are forgetting just how disabled severely autistic people can be. My daughter is high functioning autistic and I am probably as well although I’ve never been diagnosed, and we manage just fine. If you have a child who doesn’t speak, or even make eye contact, who they will have to care for for the rest of their lives and then worry what will happen to them when they die…. We’ll ask them if they would have a cure or known if their baby was going to be like this. Why does everyone have to be a victim these days. Get over yourselves and let scientists do their thing and help the severely disabled people who actually need helping and get of your neurodivergent high horse😢
I think what a lot of the community is really afraid of is that genetic research will be used to develop pre-natal testing for autism like what's used currently to detect Down syndrome. That the research wouldn't be used to cure or help children with high support needs, but prevent more from being born. It sounds like eugenics to a lot of people. At least, that's the vibe I get from frequenting autistic spaces online (I'm autistic myself). Personally I think these are legit concerns.
Great work, Dr. Chloe!
Simon Baron Cohen's flawed extreme male brain theory has played a role in why so many women are suffering undiagnosed. 'Naivety' is a very sanitised way to describe his attitude. I hope this petition has tempered his arrogance as he still seems to hold a great deal of power in autism research.
Thinking more about it...I find it very telling that they failed to mention this but found time to hint in the segment at 0:30 that autistic people are being so mean to the poor scientists, who are misrepresenting them and ignoring their needs, that they might not want to research autism anymore! What a tragedy
Stops just short of implying that autistic people should shut up and be grateful for whatever help they're offered even if that 'help' could lead to their extinction
I imagine I'd rather be studied by people who know how to do ethical research and it seems most of the autistic community agrees
And his mind-blindness and no empathy theories. He's been so damaging and not done much to retract his errors. I look forward to the day he retires.
The funny (well actually not very funny) thing about this is that naivety and "tunnel vision" are common autistic traits, and Baron-Cohen certainly hasn't escaped these himself😅
His extreme male brain theory is one of the most powerful theories available for explaining sex differences in general and autism in particular.
@@BUSeixas11 It's debunked and he no longer defends it.
Almost everyone's got something - it's the normals who are unusual
I mean one of the things being overlooked here is studies like spectrum can benifit human kind because it will contribute to a mechanistic understanding of brain neurology. Because autism is an extreme state of human neurology is good for teasing out effects that might normally be lost in background noise. Autism biology research shouldn’t be about curing autism it should be about using autism to better understand the brain in general.
The problem is even if most researchers are well meaning it only takes one to turn the basic research into a prenatal test. The real issue no one is talking about is we need a law to ban that test before it’s made. That’s where the campaigning focus should be.
Would research into preventing autism be bad? Like if parents were able to change their diets or habits to lower the risk of autism in children?
Extreme really isn't the right word to use, though I get what you are trying to say. Society needs autistic people, without which civilization would still be in the dark ages.
The prenatal test is bad, but I could see how DNA may help with diagnosis in kids and adults. The question is how much genetics matter.
@@pegasus2682 I'm autistic, the problem lies in stigmatizing autistic people as a "problem" or "defective". It is looking at a difference, like how a kid plays with toys and saying "That's wrong" even if the kid is happy and not harming himself or others.
@@the11382 in a way it does end up negatively affecting others, specifically the parents. The average cost to raising an autistic kid is significantly more, not to mention significantly more difficult. So is it unreasonable for people to want to try and avoid that?
@@pegasus2682 as an autistic person I certainly think it would be.
Research must always include and be sensitive to the community that is being researched. We move forward together or not at all.
Not at all it is 😂
Research is research, it's literal science. It shouldn't matter if it hurts someone's feelings. Every major discovery offends people when it comes out. They have to adapt their feelings to reality if they want to live a healthy life.
Autism has and is being found more because we have made it more acceptable as a whole to get evaluated for such conditions, and autism alone has become less taboo and more accommodated. So of course there will more people found to have it as more are getting studied, tested, and our understanding of the brains function and development and how autism manifests/develops improves. However there are still many factors that both well and not as well understood. That said it is not just a “mental” disability/impairment as it literally understood to be physical change in the brain’s development. As such, there are physical effects that could and do directly raise the chances of it occurring from environmental factors like certain chemicals (NOT VAXs), genetics, the age of mother and father, and etc.
Whereas something like depression and anxiety can be caused by either or both a physical or purely mental condition such as the brain not making or processing enough Serotonin to breakups work stress and etc that more relies on how the person perceives it.
Eugenics. We should be worried about Eugenics.
Practically every marginalized community has been facing this. It was the same with racist eugenicists research on so-called "race", pathologizing research on homosexuality... This is why medical researchers need to talk to the community, but also to academics in the humanities!
I think it would be easier to just figure out what's going on physiologically. Rather than throw insults at the people affected by it.
All the people in this video seem really intelligent and reasonable even if they don’t always agree… would be great if more public discourse was like this
I do think some people are too aggressive online in opposition though. People go too far. They take polite discussion as a personal attack, assuming that they're speaking for all autistic people when they're not. I've been shouted at for 'erasing #actuallyautistic voices' and "ignoring the opinion of an actually autistic man" when I merely congratulated allistic brother going on TV to compete for money for NAS (as he wasn't autistic himself). And that is being autistic myself (the disagreer never asked if I was), I hate to think what a lot of people at once would be like. I do think both sides need a lot more nuance and to be careful with good intentions.
You just did it yourself!
For autistic individuals it *is* personal.
@@TheAutisticEducator Can you explain how please?
The activists are often worse than those they claim to represent.
Keep learning.
I really like how this video seemed to truly reflect the autistic communities concerns and did not try to invalidate or infantslise us but just to point of something very commonly seen by autistic people- the video features no autistic children they only speak to autistic adults, however the thumbnail features a child- why? I'd brush this aside if it didn't seem reflective of how neurotypical people view autism- constantly through the lens of parenting. This always happens, people assume that somehow autism only affects children as if our neurotype expires at 18. It's as if people can only accept autistic traits when coming from children and can only can sympathise with the 'plight' of neurotypical parents with autistic children, instead of recognising that autistic children and adults are a mistreated, misunderstood, systemically oppressed societal group and not a click bait source of sympathy or inspiration.
My state university (Minnesota) did a study where they administered megadoses of oxytocin to autistic children to see if they could induce neurotypical social behavior. They were actually proud of potentially disrupting the development of the brains of small children. Some of this medical research is actively harming autistic people and should be called out. We should be accepting and supporting neurodivergent people, not forcing them to conform.
Not about us without us. We Autistic people are the experts about the Autistic experience.
It's crazy that they would exclude actual autistic people!
It happens every day. As an atustic I can confirm this
I think this problem of too much on biology and not enough emphasis on people's needs as patients and survivors plagues other medical conditions too. There's a lot of research on basic cancer biology but not enough on the other physical and mental health needs of patients and long term survivors. So this is a problem for a lot of conditions.
Nothing about us, without us
I can relate, I have ADHD and I went to a lecture on plastic in the Great Lakes of North America (where I live) and the lady mention how autism and adhd have risen but never made how that is connected with Neurodiversity. It is genetic, and being recognized more.
So's evolution. If they had they're way, we'd still be protoplasmic.
Here's an idea for you. Are we the start of another species, Homo Scipiens, some of us?
That's because ethics is almost unknown in this profession (cf the High Court's demolition of The Tavistock Clinic). If it were, where's the regulatory body we could complain to?
I have other neurological and mental health issues, and I hate them! I f'n hate them! I'd do anything to just be able to get through the day without screwing everything up. I want a cure. I want a damn cure. None of this is fun or special. These things are disorders. We need to get rid of this crap.
Will general autism research accept a paper by autistic researcher, I don’t think so. That should say something about the research itself.
The fact that the majority of autism research funding goes into understanding the foundations of autism (e.g. genetic basis), and in improving our basic understanding of autism in general, shows how little we understand about autistm. As our understanding is very limited, it makes complete sense to prioritise funding of research in these foundational areas, so that serves and care at the point of need are better targeted, and are more effective and efficient. I equally don't understand people lambasting researchers for using medical jargon in their research, especially when this research is foundational. It may not be the kindest language for autistic people to read about themselves, I can see that, but it is not neccessarily meant to be kind (nor unkind). It's intended to be accurate and precise.
Autism is hard to live with but 90% of that difficulty comes from lack of understanding and acceptance from non-autistic people. What good does a pre-natal test do? It won't help to prepare parents for an autistic child..but it would help them to make a decision about termination or adoption. It implies that, as science progresses, possible gene manipulation could lessen autism cases. We're talking about eugenics here. How can non-autistics not see this?
If a test can be made that tells you that you will have a severely mentally/socially handicapped child that might never become independent, then that test should be made and be made available. You don't get to use the eugenics boogyman to tell people that they must dedicate their life to a child that will effectively never grow up and will be a burden on either the family or the state their whole life.
@@MurasakiMonogatari if they focused on helping the child, maybe they would be able to live a more normal life, and maybe more people would be able to see them as their own person rather than see them as their effect on their loved ones. Plus not all autistic people are heavily reliant on support and plenty do live independently and live happy lives, just because there is the possibility that they might be harder to raise doesn't mean we should just be getting rid of them. We don't need to focus on prevention, we need to focus on helping
I agree that a pre-natal test is useless, it doesn't tell you who the child will be. Autistic people are very diverse in my experience.
@@MurasakiMonogatari But you can't know that, and it may inform your decision of what you do and how much effort you'd put in. Many autistic people are perfectly independent.
I’d prefer others not be imposed with such the same, though rather none at all in best, whether the cause it usually constitutes a curse with comorbidity and linked with earlier death.
Researchers need to put down the video games between research sessions and spend some time learning how to treat people like people instead of trying to find new and exciting ways to monetize their difficulties.
Dr's aren't in charge of the government policies that should help/benefit the Autistic.
So those complaining aren't concerned with the benefits/importance of the research, their concern is the words being used? They're concerned about their feelings being hurt smh.
there are big studies of a range of issues, syndromes, and life issues. Why was a study that may help shed light to the challenges that prevent many children from living independent lives.
This is understandable... there also needs to be more research on Asperger's and how autism manifests in *girls & women* ☆
Why? Are we admitting women's brains are different finally?
@@_ArsNova Women's brains and men's brains are far more similar than autist's brains and non-autist's brains are. Or even how UNsimilar autist brains are from other autist brains. So no, it's nothing to do with the neurology.
Aspergers is not a thing anymore, it was taken out of the dsm5 and shouldn't be used anymore for a enough reasons. /gen
@@_ArsNova I’m a girl with autism, it’s different than boys with autism. Took me until I was 16 until I was diagnosed, and even then no information on how I can help myself deal with it. Many girls are diagnosed as adults or not at all. If we understood it better, thousands of women and girls would have a better quality of life.
I feel like autism is one the last actual downtrodden voices in society. The media obsessively covers misogyny and woman's rights, LGBTQ issues, and racism. All these things deserve recognition, but the plight and treatment of autistic people may as well be the sound of silence and crickets.
A mere 16% to 22% of autistic adults are on full time employment, sometimes not meaningful employment either. Autistic adults are also likely to be lonelier than neurotypicals. At only 50% compared with 70%, and autistic people's relationships tend to last for shorter periods as well. Autistic people are also apparently more likely to be poorer and have worse heath compared to neurotypicals according to surveys.
By all means it should be a public outrage, but it isn't because it doesn't make for good corporate soundbites.
The accuracy in observation is constructive. But why complain? The sound and fury in the mainstream groups grabbing the sound-bites is of no substantial use. To suffer in silence and to keep growing as a person is more important maybe?
I actually liked the bit in the video with Simon Baron-Cohen only here: That man thrives on the research area of his interest and communicates very well about it. To take that example imho is a good approach. Your stats are useful but the outrage is of no use. To each, the power to resolve their own challenges applies imho!
I had to laugh at the phrase "autistic community".
The loneliess problem is not societal, it is because we have a harder time with social skills as part of out disability. It is simply harder for us to have strong relationships with others. Society could definitely provide interventions that could help us have better quality and longer lasting relationships though.
Autistic person married to an autistic person, with an autistic child here: Less about biology, more about properly educating the public about the reality that is autism, how all people with autism are unique in how it is for them, and definitely more research and funding for services to support ALL of us. Just from a quick initial opinion after watching this I do feel like it is worrisome that they want DNA, and I would worry that tests would screen for Autism in unborn babies. I don't know enough about this though really to comment on why they would need or not need it? what I do know is the world needs more services, scholarships for helping people with autism get therapy if they choose to do so and education for Neurotypicals especially. My mother still doesn't know I'm autistic, but I did try to tell her about my child getting the diagnosis and she said, "No I've been around autistic people and they are not as bad as them." I nearly exploded I was so angry. Then she went into a long ableist description of people who had severe behavioural problems. I find a lot of people misunderstanding what it means to be autistic, for instance, "You are really caring though, you are also really empathic." I try to politely explain that people with autism can have empathy. It's stuff like this all the time, we need more understanding and also a willingness for others to listen to our experience, so I hope autism research can help with this. I also hope the money flowing around for studying autism can help get more formal diagnosis for the under represented people who are autistic but don't fit the stereotype of "rain man dude".
You cannot tell us how our mind works and what we need for support. Only we can.
YES! The lived experience of minority communities, especially neurodivergent and mentally ill communities, is almost always discounted or even completely ignored, while researchers with no lived experience are hailed as the supreme authority.
This has to stop.
Yeah, people talk about we autistics in such demeaning and dehumanizing ways, it's rude tbph.
It can feel quite dehumanizing to talk to someone that can't or won't even look at you.
For neurotypical people, not looking at someone when they're speaking to you, or even having an extremely delayed response is rude.
You feel you are being ignored. Even if it's not the case.
@@INF1NI73 It feels like you're trying to justify dehumanising Autistic people because you can't adapt to someone's disability.
autism isnt real moron
I tried to tell my old boss about how I’m trying to get diagnosed and was told “mental illness isn’t real” and got fired this world is really cruel to this stuff
You need to speak to Citizens advice if you are in the UK as you have grounds for unfair dismissal.
Ok as an autistic person can someone please instead of research our brains and social skills. Can someone please please please research our guts. Like getting a gastro attack doesn't help my social anxiety. I'm being genuine if it gets bad enough I get overload, that starts a cycle that can last for days.
I've been recently diagnosed and to be quite honest i'm not fussed about the wording of research papers, they're for accademics in the field to use and improve services. I've got better things to worry about like going over thousands of conversational scenarios in my head every night before I sleep. All i want is better services for the issues i have with everyday life or an understanding that my brain is different and not feel like i've just been dropped from support like i just have been, if that means calling me disordered, blunt, different, awkward, wierd or not normal i'm not bothered as long as it does some good and changes are made to improve me and others who have been diagnosed on the autism spectrum.
Have you tried listening to audio books or a conversational radio station? I find radio 4 is pretty good, I have something on all night and it distracts my brain enough that I sleep well.
You have a point, but bear in mind that part of the reason there's been so little research on those things that are actually important to us is because autistic people have been shut out of autism research; and one significant aspect of that is that reading or hearing about autism research, for an autistic person, is often incredibly depressing.
The wording they use also trickles down into the dehumanising language and mindsets often seen in the few support services we can access.
They're not improving services though; that's the whole point. A vast sum of resources have been wasted on dead-ends in Autism research, directed by people who lack any curiosity about it, who just want rid of Autism because they blame it for problems, sometimes not even remotely related.
@@MasonDixonAutistic I wasn't saying it's working, I was just making the point that as long as it's good research I don't mind the wording. I do understand your point though and has a lot of truth
@@Itchyfeet4077 thanks but I have, I struggle bad with sleep and have tried everything that's readily available
It was hard enough for me to be diagnosed with Asperger's in my 40s, only because the term got yanked soon after - the break in continuity appeared to those around me like I was a psychological hypochondriac and I kept hearing "oh, now you have something else..." and that made normalizing the adaptation challenging for me. But when will the medical and neurotypical community accept that autism is not a disease, it's human evolution. No cure for autism is needed - Aspies don't need to turn neurotypical - normies need to get used to us, because we're the future.
If it helps, the revision actually broadened the scope of autism diagnoses, and may be a contributory factor in "picking up" so many missed or overlooked folks (particularly women, AFAB and older people).
Autism is not “human evolution”. It isn’t an adaptation. It’s a disorder.
@@mikekane2492 Yeah, if I could press a button and get rid of mine that would be the best day of my life.
I'm so tired of these extremists who talk about this "next stage of evolution" crap. They need to accept that they are a small minority
Those with autism are also barred from receiving organ transplants and cannot be put on a waiting list and so we will unfortunately be left to die if we need a new heart or kidney asap. It was bad enough that the term was invented by a Nazi medical doctor that wanted to get rid of us.
I would like a cure. My life is a living hell every day because of autism.
I love the tweet sound effect edit
A great report… sad that even with such a strong response from us (autistic people) the two professionals still stuck to the mantra “oh ok we need to listen to you, but we are still the experts and will ultimately get to decide what research should look like”. No. Autistic people are the experts because we live this, we are this. Why are you so worried about finding out the “cause” for autism if you don’t want to “cure“ us? Ask us what we need. Have autistic professionals leading you! There is still such superiority from professionals, you are employed because of us to work for us. So if you are doing us harm then you absolutely should be called out on it, and if it hurts your feelings I’m sorry. But our feelings and needs get put aside by society every single day, to the point where our suicide and self harm rates are through the roof, not to mention the lack of care in impatient hospitals for us. Honestly the centering of professionals feelings has to change. If you cannot accept criticism as a researcher then you are in the wrong job. You might get upset but this is our actual lives on the line.
Extremely well said! 👏🏻 👏🏻 👏🏻 💜